Consent for Approach for Research Database
Research type
Research Database
IRAS ID
367996
Contact name
Zoe Plummer
Contact email
Research summary
Consent for Approach for Research (C4AR) Database: Patients living with kidney disease under secondary care.
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
26/YH/0022
Date of REC Opinion
31 Mar 2026
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Patient identifiable information - such as name, date of birth and NHS number - is collected to allow us to confirm with kidney units that patients wishing to participate are eligible, that is, they have kidney disease and are receiving secondary care in the UK. This information will also be used, with participants explicit consent, to link their record to other UKKA owned and managed databases when the clinical data stored in them can help us to answer a research question.
Identifiable data is electronically stored and is only accessible by a limited number of UK Kidney Association employees. The research program itself will focus on topics important to patients such as quality of life and wellbeing. Participants will answer electronic questionnaires, and their responses will be stored in the C4AR database securely.
All identifiable information is removed and replaced by a scrambled patient identification code before the data is used for research. Only a limited number of UK Kidney Association employees have access to the key to de-scramble the patient identification code and trace the data back to the individual patient, should this become necessary.
Research programme
The Consent for Approach for Research database programme is being set up to conduct research on topics that are of highest importance to kidney patients of all ages receiving secondary care in the UK. The main focus is on wellbeing and quality of life. Participants might have: 1. "Acute kidney injury" - where kidney function decreases suddenly during an illness 2. "Chronic kidney disease" - where kidney function declines gradually and irreversibly 3. "End-stage kidney disease" - when the kidneys fail altogether and dialysis or kidney transplantation are considered. 4. A congenital or rare kidney disease where kidney function can vary. This database aims to create knowledge benefitting both kidney patients and the wider kidney community.
Research database title
Consent for Approach for Research (C4AR) Database: Patients living with kidney disease under secondary care.
Establishment organisation
The Renal Association
Establishment organisation address
Brandon House Building
20a1 Southmead Road
Bristol
BS34 7RR